"The Early Years are Like a Foundation for the Future" Perspectives, Facilitators, and Challenges of Anganwadi Workers in Supporting Early Child Development Interventions in Hyderabad, India: Qualitative Findings from a Scalable Program Incorporating Early Child Development Interventions.

BACKGROUND: Integrated Child Development Services (ICDS) scheme, a large public health program, addresses the needs of young children with Anganwadi Workers (AWWs) as frontline agents of delivery. A scalable program incorporating early child development interventions (ASPIRE) has been developed to complement the program and address some of its gaps. OBJECTIVES: This paper describes formative work done with AWWs, as part of ASPIRE to assess their understanding of early childhood development (ECD) and acceptability of a novel ECD intervention using digital technology. MATERIALS AND METHODS: Six focus group discussions (FGDs) were conducted with 31 AWWs, using a semi-structured guide. RESULTS: Framework analysis of their responses from FGDs led to the identification of three themes: (1) time use, (2) understanding of ECD, and (3) delivering messages using videos. The findings suggest that AWWs tight schedules often leave them feeling overburdened with work. They are aware of factors that can aid as well as hinder child growth and development, but their understanding of play is limited to games played by older children. They expressed acceptability in using a video intervention, specifying features that would increase relevance for families. CONCLUSION: Integration of novel ECD interventions delivered by frontline workers needs to take into account their existing work schedules and associated challenges. Training on ECD interventions will need to broaden AWWs understanding of the critical foundational experiences which responsive caregiving and early child stimulation can provide.

Locked down-locked in: experiences of families of young children with autism spectrum disorders in Delhi, India.

Introduction: The onset of the COVID-19 pandemic and subsequent lockdowns in March 2020 disrupted the lives of families across India. The lockdown related restrictions brought forth a multitude of challenges including loss of employment, social isolation, school closures and financial burdens. Specifically, it also resulted in the restriction of health-care services for children with neurodevelopmental disabilities. Methods: This qualitative study was conducted as a part of a larger trial in India to understand the experiences of families of young children with autism during the pandemic. In-depth interviews were carried out with 14 caregivers residing in New Delhi, India. Results: Our findings identified pandemic and lockdown's universal impacts on family life and financial stability stemming from job loss, business closure, and salary deductions, affecting quality of life of families. Furthermore, COVID-19 pandemic's impact on autistic children was evident through limited access to essential services and financial challenges related service interruptions even after resumption of services. The lockdown's novelty also affected children's behavior, with both challenging behavioral changes and positive impacts. Primary caregivers, predominantly mothers, assumed additional responsibilities in household tasks, schooling, and therapy administration. While some these experiences were universally experienced, a few of these improved outcomes for autistic children. Despite challenges, parents expressed gratitude for their family's safety and well-being during the difficult time. Discussions: These findings inform service provision for vulnerable families and offer implications for designing interventions such as credit schemes for families, guidance and resources for establishing and maintaining routines of children with autism, adopting flexible and adaptable approaches to service delivery, and special provisions for children with autism to be able to maintain their routines outside of home. Furthermore, the study highlights the need for comprehensive support, including educational resources and stress management counselling to empower parents in supporting essential care and routines for their children during such unprecedented times.

Development of a cost of illness inventory questionnaire for children with autism spectrum disorder in South Asia.

BACKGROUND: The economic burden of autism is substantial and includes a range of costs, including healthcare, education, productivity losses, informal care and respite care, among others. In India, approximately, 2 million children aged 2-9 years have autism. Given the likely substantial burden of illness and the need to identify effective and cost-effective interventions, this research aimed to produce a comprehensive cost of illness inventory (COII) suitable for children with autism in South Asia (India) to support future research. METHODS: A structured and iterative design process was followed to create the COII, including literature reviews, interviews with caregivers, pilot testing and translation. Across the development of the COII, thirty-two families were involved in the design and piloting of the tool. The COII was forward translated (from English to Hindi) and back translated. Each stage of the process of development of the COII resulted in the further refinement of the tool. RESULTS: Domains covered in the final COII include education, childcare, relocation, healthcare contacts (outpatient, inpatient, medical emergencies, investigations and medication), religious retreats and rituals, specialist equipment, workshops and training, special diet, support and care, certification, occupational adjustments and government rebates/schemes. Administration and completion of the COII determined it to be feasible to complete in 35 minutes by qualified and trained researchers. The final COII is hosted by REDCap Cloud and is a bilingual instrument (Hindi and English). CONCLUSIONS: The COII was developed using experiences gathered from an iterative process in a metropolitan area within the context of one low- and middle-income country (LMIC) setting, India. Compared to COII tools used for children with autism in high-income country settings, additional domains were required, such as complimentary medication (e.g. religious retreats and homeopathy). The COII will allow future research to quantify the cost of illness of autism in India from a broad perspective and will support relevant economic evaluations. Understanding the process of developing the questionnaire will help researchers working in LMICs needing to adapt the current COII or developing similar questionnaires.